5 posts from April, 2009

Sharing to Feel Better

Posted April 10th, 2009 by

familyfun-sandbox Sharing.  It’s a concept we all learn at a very young age.  Oftentimes reminisced as happening in the sandbox, we think back to our young selves giving up what we hold most dear (in this case, some cheap plastic toy) to allow someone else to benefit from it.  It seems so simple and obvious, but how many toddlers do you know that immediately give into the concept…easily handing over that toy without a moment of hesitation or a slight tug back or possibly the more extreme screaming tantrum?   Over time, what happens is that the more they share, the more they see it puts a smile on their friends’ face, or gives them something in common to “chat” about.

You don’t need to be clairvoyant to see where I’m going with this.  Sharing is at the core of PatientsLikeMe, and it’s what makes our communities so special.  More than 32,000 patients are online sharing something they hold dear — details about their health — so that others can see it, learn from it, and dialogue about it.  It’s truly inspirational and something we believe is transforming healthcare as we know it.

But sharing doesn’t have to stop there.  From a marketing perspective, one of the most widely used and successful viral tactics is the “Share This” button.  You see it everywhere online – blogs, news articles, videos, and more.  We just recently implemented it across our site, so patients can “Share This” treatment or symptom report, press releases, research findings, etc.  It’s an easy way to pass that “toy” across the cyber-sandbox to others who might learn or benefit from it.

It’s nice every once in a while to think back to what we learned as kids and figure out a way to incorporate those values into our adult lives.  Sharing is just one of those things.

So you weren’t the type to share your toys?  Feel like you share too much?  Comments are welcome below.

PatientsLikeMe member lscanlon


Announcing the PatientsLikeMe ALS Genetics Search Engine

Posted April 8th, 2009 by

This month marks the 3-year anniversary of our flagship ALS community.  While there have been so many exciting milestones we’ve reached in that time, we’re always looking at ways to bring new insight to this disease.

Today, we’re announcing the launch of our Genetics Search Engine for people with ALS.  Imagine finding other patients just like you, down to the genetic level.  Patients in our ALS community can now do that.  (For patients who don’t see their genetic mutation right now, that’s alright.  They can be the first with that genetic mutation to join our community and share information about the disease.)

What does sharing genetics mean for research?  By capturing data on familial ALS patients’ known genetics (such as SOD1 A4V, SOD1 D90A, and VAPB P56S), we can learn more about the cause and effects of every kind of ALS and better our chances of advancing research and finding new treatments. Our goal in launching the Genetics Search Engine (and other upgrades like it) is to help patients find others just like them and enhance our understanding of the phenotype of each genetic mutation (i.e., different causes of ALS have faster or slower disease progression).

The Genetics Search Engine is a major step toward incorporating genetics for the PatientsLikeMe communities, and it’s an exciting one.  Give it a try and let us know what you think…

PatientsLikeMe member cbrownstein